When we think about planning, we usually think about big life events—weddings, having a baby, or saving for college. But have you ever thought about planning for your healthcare, especially if you couldn’t speak for yourself? It might sound intimidating, but advanced care planning is simply about making sure your loved ones know your wishes if you're ever unable to communicate.
What is Advance Care Planning?
Advance care planning means having conversations about what type of medical care you’d want if you couldn’t make decisions for yourself. This includes naming someone you trust to make decisions on your behalf, making sure they know your wishes, and ensuring they’re willing to carry them out.
These conversations are essential for those living with multiple myeloma. There may come a time when you’re not able to speak for yourself. Even something as simple as undergoing anesthesia for a procedure means you're temporarily unable to communicate.
Do You Have a Plan in Place?
Many of us have taken steps like completing a will or setting up a healthcare power of attorney, which names someone to make healthcare decisions for us. You might also have heard of a living will—this document outlines what treatments you would or wouldn’t want if you couldn’t make those decisions yourself.
But here's the thing: medical care is constantly evolving, and the options available today may look very different from what was available even five years ago. So, it's important to stay informed about your options and what treatments you would prefer.
Who Should Be Your Spokesperson?
It’s crucial to pick someone you trust to act as your spokesperson if you’re ever unable to make decisions. But keep in mind, it’s not always easy for someone close to you, like a spouse, to carry out your wishes. Sometimes, emotions can make it tough for loved ones to follow through with what you want, especially if it involves tough decisions like stopping life-saving measures. You might want to consider a trusted friend or family member who can handle the responsibility.
Understanding Your Options
One of the big decisions to make is about resuscitation—if your heart stops or you stop breathing, do you want CPR? CPR is a procedure only used when someone has no pulse or is not breathing, so it's a good example of why advance care planning is essential. If you're unable to say whether you want CPR, the default is to perform it.
But your options go beyond CPR. Medical care can involve anything from medications to surgeries, or even life-support measures like being on a ventilator. You can decide how aggressive you want your treatment to be, whether that means doing everything possible to extend your life or choosing a more natural approach.
Making Your Wishes Known
It’s not enough to just have these conversations once. Every time you're admitted to the hospital, they’ll ask about your code status (whether or not you want resuscitation) because your previous decision doesn’t carry over from one hospital stay to another. However, some states now have documents that allow your wishes to follow you between hospital visits. In California, for instance, this is called a POLST (Physician Orders for Life-Sustaining Treatment) form.
Once you've filled out your forms, make sure they're easily accessible. Many first responders are trained to check places like your bedside table or even the refrigerator for these documents.
Don’t Forget the Digital World
In today’s digital age, advance care planning isn't just about your medical care. Think about your phone, your social media accounts, and your online banking. If you’re unable to manage these, someone else will need access to make sure things run smoothly. Make sure you share important passwords and account information with a trusted person.
Start the Conversation Today
The most important part of advanced care planning is having open conversations with your loved ones. Let them know your wishes, and make sure they’re comfortable with the decisions they might have to make on your behalf. You can even make it a family discussion—some people have found that Thanksgiving, when everyone is gathered, is a great time to talk about these things.
There are lots of resources available to help guide you. Websites like prepareforyourcare.org offer state-specific forms and advice to help you through the process. And don’t forget, your healthcare providers, especially social workers, are excellent resources.
Planning Is Empowering
Planning for your healthcare isn't about expecting the worst—it's about giving yourself and your loved ones peace of mind. By making these decisions now, you take the pressure off your family during a difficult time, allowing them to carry out your wishes confidently.
The IMF understands that these are tough, but necessary decisions and conversations. We hope that this blog offers you basic assistance in the advance care planning process.
This blog was adapted from a presentation by Wendy Thomas, RN, MSN, CHPN. Watch the replay of this presentation here. You can also view more informative discussions from the IMF Patient and Family Seminar in Los Angeles here.
The International Myeloma Foundation hosts 4 Patient and Family Seminars across the U.S. each year. Join us in-person or find an online event at events.myeloma.org